What happens to the self

in dementia

Implications for assessment and care

John Ward, Feb, 2015.

What I want to cover

• What is the nature of the loss of ‘self’ in dementia and is this important

• What is the ‘self’ and how can we understand its loss in dementia

• Is there a way of perceiving the ‘self’ that allows us to better understand dementia

• What are the implications for the healthcare system

The First Senior Moment on Record

And that’s what happened to the dinosaurs.

Fear of dementia centres on loss of self

• Disproportionate fear of dementia

• “I don’t want to become a vegetable”

• “I don’t want to be a burden on my family”

• Talk of suicide/euthanasia

Carers perceive the loss

• “He’s no longer the man I married”

• “I’ve lost my husband”

• “I get no thanks for anything I do”

• Anticipatory grief

PWD perceive the loss

• “People ignore me as though I am not there”

• “I didn’t like Dr X – he just spoke to my wife”

• “My friends/family no longer come to visit”

A son’s description of his father’s decline due to AD

• “a prism that refracts death into a spectrum of

its otherwise tightly conjoined parts – death of

autonomy, death of memory, death of

consciousness, death of personality, death of

body…..its particular sadness and horror stem

from the sufferer’s loss of his or her “self” long

before the body dies”.

Jonathon Franzen, The New Yorker, Sept 10, 2001, p89.

Where is the loss of ‘self’ in dementia?

• Mild

o memory impairment

o impairment of praxis, speech, judgement, calculation

• Moderate

o delusions, hallucinations

o getting lost in familiar areas

o difficulties with personal care

o incontinence

o impairment of speech and movement

• Severe

o bedfast; totally dependent

o difficulties with swallowing, eating

Historical views of self

• Pre 17C - traditional/religious view – non-material soul

• 17 C - Descartes – doubting, thinking

• 18 C – Locke, Hume

• From 1600 to mid 20C, Cartesian dualism was predominant view (non-materialism/non-reductionism)

• Modern view epitomised by philosopher Derek Parfit

(Reasons and Persons,1984)

– bundle theorist (reductionist)• the self is a bundle of brain circuits

• identity maintained by psychological continuity – overlapping chains of connectedness

Neuroscience view of self - Ramachandran

• Defining characteristics of self

– Continuity – thread linking past, present and future

– Unity of coherence – we experience as one person despite diversity of environments, activities

– Embodiment or ownership – we feel anchored to our bodies

– Agency/free will – feeling in charge of actions

– Self-reflection and self-awareness

• All can be damaged or destroyed by brain diseases

Douglas Hofstatder – I am a Strange Loop

• ‘Self’ is an epiphenomenon

• A neural and social construct

• A network of loops linking:

– various networks in the brain

– the brain and the body

– the brain/body and the environment

– the brain/body and significant others

– the brain/body and the social environment• culture, religion, media, life-histories

Loops - M C Escher

Loops – M C Escher

Loops – M C Escher

What is the self?

• Not a little man in a Cartesian theatre (ego, soul)

• Not a discrete part of the brain

• An epiphenomenon

• A neural and social construct

• A series of loops (Hofstadter).– linking parts of the brain

– linking brain and body

– linking brain/body with other people and the environment

– linking brain/body with culture, spiritual beliefs, community

The self (or loops) in dementia

• Gradually diminishes in the person with

dementia

• Can remain intact or diminish much less in

spouses, family, close friends

William Utermohlen’s self portrait from 1967 –age 55

William Utermohlen’s self portrait from 1996 – year after diagnosis

William Utermohlen’s self portrait from 1997

William Utermohlen’s self portrait from 1998

William Utermohlen’s self portrait from 1999

William Utermohlen’s self portrait from 2000

Issues regarding self/loop in dementia

• How do we relate to person with dementia to avoid

unnecessarily further eroding ‘self’

• How do we support the family to provide care for a

person who may increasingly seem a stranger

• How do we structure care systems to minimise

erosion of ‘self’

Personhood - Kitwood

• A standing or status that is bestowed upon one

human being, by others, in the context of

relationship and society

• It is lack of appropriate care not the disease that

takes personhood from people with dementia

• We do this by ‘malignant positioning’ of the PWD

• We avoid this by person-centred care

Minimising the undermining of self

• Assessment

– avoid embarrassing PWD or family

• Management plans

– emphasise autonomy, capacities

• Case management/family support

– available at all times

• Capacity assessment

– never question family in presence of PWD

• Minimise repeated demeaning cognitive testing

Preserving self in clinic assessment

• Teams of two – doctor and key worker (ideally RN)

• Doctor interviews PWD and family but asks no questions that would embarrass either party

• When ready to examine PWD, ask family to step out

• Family interviewed by nurse– family can talk freely

– nurse asks about delusions, hallucinations, behaviour,

personality change, capacity, carer attitude and stress

• Nurse visits PWD and family a couple of weeks later

• Nurse case manages PWD and family

Newcastle model for assessment and management of dementia

• Six Community Dementia Services in GNC (3 LGAs)

– each serve populations of 50,000 – 80,000

– each has at least one Community Dementia Nurse• attached to ACAT

– each has a part-time geriatrician

– weekly clinics in each area – two in West Lake Macquarie• Geriatrician and CDN work together

– home visits and visits to ACFs

– CDNs case manage• difficult behaviours, carer stress, younger onset dementia

Summary

The erosion of ‘self’ is both a feared and experienced

aspect of dementia – often the most dreaded

The dementia journey can be best understood if we see

the ‘self’ of the PWD as linked selves/loops

How we manage dementia can impact significantly on

the erosion of ‘self’ in PWD and family

. we need CDNs (or other key workers) and geriatricians

working together in all areas of Australia

Saturday Night Fever, ages 79, 87

Dirty Dancing, ages 92, 79

Easy Rider, ages 98, 90